Introduction

According the American Cancer Society, patient bills of rights are developed “to empower people to take an active role in improving their health, to strengthen the relationships peoplehave with their health care providers, [and] to establish patients’ rights in dealing with insurance companies and other specific situations related to health coverage.” Establishing clearly defined patient rights helps create uniformity of care across healthcare fields and enables patients to have uniform expectations during their treatment. As with other bills of rights, modern bills of patient rights establish that persons can expect certain treatment regardless of their socioeconomic status, religious affiliation, gender, or ethnicity.

Patient rights are a subset of human rights. Whereas the concept of human rights refers to minimum standards for the ways persons can expect to be treated by others, the concept ofethics refers to customary standards for the ways persons should treat others. As such, rights and ethics are usually flip sides of the same coin, and behind every ‘patient right’ is one or more ethical principle from which that right is derived.

While bills of patient rights vary among hospitals and other organizations, the commonly established rights tend to derive from a core set of ethical principles including autonomy of the patient, beneficence, nonmaleficence, (distributive) justice, patient-provider fiduciary (trusting) relationship, and the sanctity of human life. The establishment of whether one principle is of greater inherent value than another is a philosophical endeavor that varies from authority to authority. In many situations, beliefs may directly conflict one another. When a legal standard does not exist, it remains the obligation of the health care provider to prioritize these principles to achieve an acceptable outcome for the patient.

This essay will analyze patient rights with respect to their associated ethical principles with accompanying historical perspective.

Issues of Concern

Brief History of Medical Ethics and Human Rights

Writings that specify ethical obligations (both in general and by physicians) predate by millennia writings that specify human rights (both in general and for patients). The earliestwritings containing ethical principles date from the Old Kingdom of the Egyptians, e.g. the autobiography of Nefer-seshem-re, circa 2340 BCE. Ethics began to flourish as a scholarly discipline during the golden age of Greece (the time of Socrates, Plato, and Aristotle) in the 5th century BCE. In these respective cultures, discussions of physicians’ ethical duties date to the same times as well, e.g. an inscription on the tomb of Nenkh-Sekhmet, “chief of the physicians,” circa 2400 BCE, and the writings of the Hippocratic school of Cos in the 5th century BCE. Deontological or “duty” ethics (which stems largely from the writings of Immanuel Kant in the late 18th century and is a dominant form of ethics within modern law and healthcare) imposes on persons the obligation to preserve the rights and freedoms of others.

Whereas the Cyrus Cylinder (from the 530s BCE) is an exception, human rights writings are a relatively late development in civilization. The Magna Carta (1215 CE) first established political rights for citizens living in Western society. However, human rights did not enter into Western scholarly or philosophical circles until the 1600s and 1700s by Enlightenment thinkers such as John Locke. Whereas patients had earlier been enabled to establish “rights” through civil suits against their healthcare providers after adverse outcomes (1374 CE)[1], the first policy-making body to establish prospective patient rights was the First Geneva Convention (1864) on behalf of wounded soldiers. The World Health Organization (formed in 1948) created the first bill of health rights intended for application to all persons. Since then, the movement to expand patient rights has become increasingly widespread across all of healthcare.

As the rationale for patient rights depends on the ethical principles that predated them, the moral principles will be discussed first, followed by a discussion of how they result in related patient rights.

Overview of Core Ethical Principles in Modern Western Medicine

Beneficence

Beneficence is doing what is in the best interest of the patient throughout the process of diagnosis and treatment. The physicians of the Hippocratic school of Cos vowed to "help the sick" in a general sense. In recent times, such as with the development of osteopathic medicine, Western physicians have begun to renew the call for a more holistic approach to benevolence, which entails addressing the patient’s emotional, social, and spiritual well-being in addition to the care of the body.

Of the other principles, a physician's intent for beneficence conflicts most often with patient autonomy. This conflict has led to the development of documentation in which the patient must demonstrate their understanding of predictable consequences of his decision to act against medical advice. When disagreements arise between a healthcare provider and a patient, the health care provider must explain the reasons for his or her recommendations, allowing the patient to make a more informed decision.

Patient Autonomy

Autonomy (literally “self-rule”) refers to the capacity to live according to one's own reasons and motives. Concerning the autonomy of ordinary citizens, Western society has undergone a radical change in the last 350 years. Before the Enlightenment, most persons lived under the rule of a monarch or similar type of authority. Early Enlightenment philosophers (e.g., Hobbes, Locke, and Rousseau) advocated what is now called social contract theory. This is the view that persons' moral and political obligations should depend on an agreement amongst themselves regarding which rules will hold in their particular society.

Later philosophers argued for individual autonomy to an even greater degree than championed by social contract theorists. Autonomy as a fundamental aspect of human existence was advanced largely by two moral and social philosophers, John Stuart Mill (early 19th century; of the school of utilitarian liberalism) and Immanuel Kant, respectively. Kant proposed that each person of sound mind should first live in moral autonomy, imposing moral decisions regarding himself or herself on himself or herself and secondly allow all other persons to do the same. Mill advocated autonomy with regard to a person’s capacity to govern oneself, and subsequent philosophers and jurists expanded autonomy to include other forms of self-expression. Western post-Enlightenment philosophy and law no longer are concerned with whether autonomy in its various forms is a human right but instead to whom it extends and to what degree.

A patient who can defend his or her judgments has the right to make decisions that do not coincide with what the physician believes is beneficial to that patient. This philosophical concept has become a legal right essentially throughout the Western world. As legal precedents have advanced the requirements for patient autonomy to a greater degree than the requirements for health care provider beneficence, patient autonomy has arguably become the dominant principle affecting patient rights. For example, a patient may refuse treatment that the physician deems to be an act of beneficence. In such cases, the unwritten social contract between patient and physician requires that medical professionals still attempt to inform the patient of potential consequences of proceeding against medical advice. A patient's autonomy is violated when family members or members of a healthcare team pressure a patient or when they act on the patient’s behalf without the patient’s permission (in a non-emergency situation).

A restriction in autonomy occurs when a patient is unable to demonstrate the ability to make ndependent, rational decisions. In the United States, being a minor restricts a patient’s right to exercise autonomy in some circumstances but not in others. For example, states do not have laws allowing a minor to refuse a blood transfusion against the wishes of the minor’s parent but do have laws allowing a minor to seek and receive a prescription for contraceptive therapy even against the parent's wishes.

Although patient autonomy trumps physician benevolence in these circumstances, a physician may still refuse to provide treatment if the physician believes the treatment would cause greater harm than good based on the principle of nonmaleficence.

Nonmaleficence (“Do no harm”)

Complementary to beneficence, nonmaleficence seeks to ensure a patient will be no worse off (physically, emotionally, or otherwise) after treatment than before. Nonmaleficence dates to the medical writings of the early Egyptians, as cited earlier. The Hippocratic Oath lists specific acts of nonmaleficence, including euthanasia, abortion, an attempt by the professional at procedures outside of his area of expertise, stealing property, making sexual advances, and violating privacy. The consideration of whether a treatment plan is or is not malevolent extends to all types of treatments, including medications, physical manipulations, and invasive procedures.

In relation to other ethical principles, nonmaleficence most commonly conflicts with beneficence. Despite the potential reason for why treatment is beneficial, the therapy may have unintended harm. Examples of this include procedures in which a surgeon must cut into a patient’s body, or with certain drugs (such as chemotherapies) by which the body is essentially poisoned so that it may have the opportunity to later heal. In each case, the odds and degree of harm must be weighed against that of benefit. Physicians cannot control all responses to treatments, and so a physician can still act under the principle of nonmaleficence if the physician takes measures to minimize the chances of harm and informs the patient prior to taking the risk so that the patient has the opportunity to accept or decline the risk.

Patient-Provider Fiduciary Relationship

Not unique to the medical profession, but essential to its function, is the trust (Latin: fiducia) that the client places in the professional. Primarily, the belief is that the health care professional will act in such a way as to serve the client’s best interests. There is inherent unequal power within a patient-physician relationship. As stated by the Illinois Supreme Court,

“[T]he physician-patient relationship has: it's foundation on the theory that the former [physician] is learned, skilled and experienced in those subjects about which the latter [the patient] ordinarily knows little or nothing, but which are of the most vital importance and interest to him, since upon them may depend the health, or even life, of himself or family. [T]herefore, the patient must necessarily place great reliance, faith and confidence in the professional word, advice, and acts of the physician."

Patients have different preferences for the degree of passiveness or proactiveness they exert within the fiduciary relationship. Emanuel and Emanuel described four patient-physician relationship models within the history of Western medicine.[2] In each model, the patient and physician relate to each other with a varied degree of passiveness or proactiveness.

In a paternalistic relationship, the doctor decides on behalf of the patient. This is the most passive type of relationship for the patient.

In an interpretive relationship, the doctor first discerns what the patient’s goals and values are and then offers options that help achieve those goals and preserve those values. The patient remains passive in this relationship.

In an informative relationship, the doctor provides information to assist with a decision and, without swaying the patient, allows the patient to decide for himself or herself.

In a deliberative relationship, the doctor and patient collaborate essentially as equals. They work together. This model is the most likely to achieve a patient’s healthcare goals and preserve his or her values.

Justice

In healthcare, justice refers explicitly to the philosophical concept of “distributive justice.” This principle asserts that all persons (patients) will be treated fairly and equitably. It means not only respecting the rights of individuals but also treating all patients in a given situation the same regardless of who they are. Laws and policies within healthcare use the principle of justice to establish access for all persons to obtain healthcare required to preserve life, such as in emergency situations. Some governing bodies, such as the Canadian federal government, have extended justice in healthcare far beyond emergency care. Distributive justice, as defined by John Rawls, can be understood as equal respect for persons – entitlement of persons having a given need to the same rights and services as other persons with the same need and the provision of services of a more significant benefit offered to persons with greater need.

Sanctity of Human Life/Human Dignity

In addition to prescriptions regarding moral behavior, the belief in a creator god or set of gods is a common feature of the earliest literate societies. Before 500 BCE, the Egyptians, Babylonians, Assyrians, Vedic culture of ancient India, Greeks, and Israelites all wrote regarding theology in conjunction with moral behavior. The ethical codes of all these early civilizations condemned lay citizens from ending the lives of other citizens. For the ancient Egyptians, preparation for one’s afterlife was a major facet of one’s present life. Ancient Greek philosophers including Plato and Aristotle taught extensively about the notion of humans having souls.

The Israelites (founders of a nation of people later to be known as Jews) originated the notion of a divinity that placed value on the lives of all members of the society of believers. The Jews also were original in believing that the divinity itself was the author of the societal moral code, that the divinity created humans in Its image, and that human life itself, therefore, is sacred or holy. The idea that a person is created “in the image of God” is mentioned several times in the book of Genesis alone (Genesis 1:26-27, 5:1-2 9:6). The book of Psalms echoes this concept, when the psalmist asserts that God was responsible for his formation, in contrast to the notion that the psalmist may have been formed solely by biological mechanisms (Psalms 139:13). Christianity retained the holy books of Judaism and much of the Jewish philosophy pertaining to the sanctity of the lives of its adherents. The book of Acts, for example, professes that God gives life and breath to all people (Acts 17:25).

Christian culture fused with Greco-Roman culture in the 4th century CE upon the Christianization of the Roman emperor Constantine and his family. This fusion eventually resulted in the dissemination of Judeo-Christian beliefs on the value of human life throughout the West geographically and, later, through the development of all three North American countries. Judaism has become the second largest religion in North America. Islam, the third largest religious group in North America, shares much in common with Judeo-Christian belief, not only concerning its traditional stories and notions of God, but also concerning notions of the sanctity of human life. Although Mexico, the United States, and Canada's governments were based on the separation of religion and state, the moral teachings of the Abrahamic religions have nevertheless greatly influenced the health care policies of these three countries both in the laws at the national and state level and in the rules set by medical societies and medical administrative organizations. Furthermore, the belief that human life is sacred is not limited to the Abrahamic faiths. As just one example, the Hippocratic physicians (living in a polytheist society) vowed not to take measures to end human life either prior to conception or in the setting of gravely ill patients.

Scientific advancement has allowed the study of human fetal development and options for the care of sick and dying adults to a more advanced degree than what was possible for ethicists of earlier centuries. The question of modern debate no longer is at what point an embryo is biologically human but at what point it be granted rights as one. Similarly, in many instances, physicians no longer wonder how to prolong the life of a suffering individual but whether it is the morally correct decision to do so. Instances have occurred in which patients have been pronounced clinically dead or in a persistent vegetative state but have later regained consciousness.[3] It is not possible to determine when a soul departs a body.

Drafted shortly after World War II in response to Nazi experimentation on humans and an increased need for international standards, the Declaration of Geneva (Physician’s Pledge) and International Code of Medical Ethics both included language protecting the rights of the unborn. However, revisions in subsequent decades gradually made the language vaguer prior to eventually removing it altogether. Under the 1948 Declaration of Geneva, it was the duty of a doctor to respect human life “from the time of conception.”[4] In 1994, the phrase was revised to respect human life “from its beginning” and in 2005 was retracted altogether.

As with all ethical dilemmas, reaching a morally acceptable decision requires examination of how each of the core ethical principles interplay. For example, while abortion proponents emphasize beneficence and patient autonomy for the mother, pro-life supporters place greater emphasis on nonmaleficence and the sanctity of human life for the unborn child.

Clinical Significance

Patient Bill of Rights in Modern Medicine

The 1973 American Hospital Association patient bill of rights was the first bill of rights written specifically for patients. Patient bills of rights by non-legal entities are limited with respect to the enforceability of the number of people they protect.

Many North American laws do protect a variety of patient rights, notably the Canada Health Act of 1984, the American Patient Protection and Affordable Care Act of 2010, and Article 4 of the Mexican Constitution of 2005. However, none of these countries has a specific law outlining a general patient bill of rights, in contrast both to multiple European countries. The North American countries' "bills of rights" protecting human rights do not relate to healthcare per se. The closest that a North American government has come to pass an actual patient bill of rights was in 2001. That year saw the failed American Bipartisan Patient Protection Act; the failed Canadian Standing Senate Committee on Social Affairs, Science and Technology bill; and the failed Canadian C-261 bill. Many individual states and provinces have created their own specific patient rights policies. In the states that have no plans, the decision regarding whether or not to use such a system is up to the individual hospital. Thus, there continues to be considerable variation in standards from region to region and from hospital to hospital.

Examples of patient rights in common usage are listed below. Some rights are influenced by only one of the principles discussed above, some rights are affected by several principles, and others are influenced by other ethical principles altogether.

Informed Consent

The right to informed consent is composed of two parts: first, the right to be informed of potential harm to one’s property (one’s body) caused by a hired agent, and second, the right to autonomy. It was not until the 19th century that physicians began to advocate that a patient should be given an adequate amount of information to understand his or her state of health.[5] After landmark decisions by judges in the 20th century, especially in the 1970s with Canterbury v. Spence, Cobb v. Grant, and Wilkinson v. Vesey, in 1981 the American Medical Association recognized for the first time informed consent as "a basic social policy" necessary to preserve patient autonomy even at the expense of a physician’s desire for beneficence.

The roots of informed consent stem from the social contract theorists of the 1600s and 1700s mentioned previously. Under this social construct, patients own their bodies (their “property”). Medical therapies may have a genuine possibility of damaging that property. Thus, patients have the right to decide independently what risks and costs to incur regarding their bodies. The null assumption by physicians for most of the history of Western medicine has been that the patient is interested in whatever plan the medical professional thinks is best. In contrast, the null assumption under the moral philosophy of autonomy is that the physician has no way of knowing what patients want and must enable patients to decide for themselves whenever the patient has the mental capacity to do so. American courts have established that a risk of harm as low as 1% must be explained to the patient before submitting the patient to any therapy if that harm entails death or a life-altering complication, such as paralysis (Canterbury v. Spence).

Refusal of Treatment (by both patient and physician)

A patient may refuse treatment that the physician deems to be an act of beneficence out of the principle of autonomy. Conversely, a physician may refuse to offer a treatment out of nonmaleficence because the physician believes the treatment would cause greater harm than good. Either way, the medical professional must provide informed consent regarding the issue.

Medical Treatment in an Emergency

The right to medical care in an emergency is derived from the principles of beneficence and justice, and its concept dates to the Hippocratic Writings. Life-saving measures must be taken to the point of stabilization, regardless of the patient’s ability to pay for treatment. At present, medical institutions differ in their extension of this right. First, institutions differ regarding precisely what constitutes an emergency. Second, they differ in the determination of what point a patient is considered stable enough to discontinue treatment or to require some guarantee of future compensation before providing additional treatment. These differences mean that patient experiences can vary from institution to institution when receiving care in an emergency.

Confidentiality

Confidentiality stems both from the physician-patient fiduciary relationship and from autonomy. The patient trusts that the physician will not allow others to know particulars of the patient’s illness or situation, information that could be used by others to take advantage of or otherwise harm the patient. By preservation of confidentiality, patients are granted autonomy in that they retain control over who has access to know the status of their health.

Continuity of Care

Continuity of care refers to a patient’s ability to choose future relationships with healthcare providers. A patient has the right to have a role in accepting or refusing referrals to certain specialists and home treatment plans. This is in the best interest of the patient (beneficence) because it empowers the patient to make decisions over his or her own treatment (autonomy). Additionally, continuity of care helps preserve a patient-physician fiduciary relationship. Joint physician-patient decision-making is enhanced when care is continued beyond the initial encounter. Continuity of care also necessitates that a patient receives an explanation of how to maintain health beyond the hospital or clinical setting. If transfer to another facility or provider is required, then the patient is entitled to an explanation of why this is necessary.

Current Patient Declaration of Rights

As an example of a current patient bill of rights, the Indiana University Health's patient bill of rights includes the following rights:

To be treated justly

To receive information about care

To refuse treatment

To have confidential medical care

To have continuity of care

To have pain treated to a level of toleration

To be free from physical restraints (unless the patient is thought to be likely to hurt himself or others)

To view medical records

To have explanations about bills

To provide advanced directives

In contrast to many other first world countries, in the United States, a citizen’s ability to obtain treatment for a common non-life threatening condition at a heavily subsidized cost is not a right. However, the Affordable Care Act of 2010 (ACA) moved the United States closer to those other countries by offering more of its citizens the ability to afford the healthcare they desire. The ACA includes language that:

Preserves rights for children with pre-existing conditions to gain or maintain coverage

Protects Americans’ choice of doctor

Ends lifetime expense limits on the care consumers may receive

Some patient bills of rights also extend additional protection to a patient’s finances from seizure by the patient's provider and health care insurer.

Enhancing Healthcare Team Outcomes

Patient rights are a subset of human rights applied in the specific context of medical treatment. The establishment of patient rights standardizes the application of ethical principles to particular medical situations. Such documents provide the framework by which a patient can expect to receive care and by which members of a healthcare team can best promote the rights for each patient. Knowledge of certain ethical principles is necessary for understanding the context by which patient rights are created. Patient rights extend to the whole person. They preserve aspects of the patient’s relationship with his or her health care provider, even extending to third parties such as a health care insurer in some cases. Although patient rights can be traced to ancient cultures, the idea of a formal patient bill of rights is a relatively recent development, with the first such composition occurring in 1973. Presently, though American federal laws enforce some patient rights nationally, many issues pertaining to patient rights vary by healthcare institution.

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Publishes a plain-language brochure, informing patients about what they should expect during a hospital stay

Replaced the AHA's Patients' Bill of Rights

Describes the rights and responsibilities of patients during a hospital stay

Is a federal requirement

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Surgery and reconstruction of the other breast to produce a symmetrical appearance

Prostheses and physical complications at all stages of mastectomy

All of the above

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Patient cannot be hospitalized against his will under any circumstances

Patient cannot be operated on under any circumstances

Patient may sign out against medical advice

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Information must be placed in "protected status" if deemed necessary for personal safety

Patients must be interviewed and examined in surroundings that ensure privacy

Privacy is up to the patient

Both 1 and 2

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Bipartisan Patient Protection Act in health plans which passed the Senate in 2001

National Registry of rights granted to patients

A document published and posted by each facility or institution according their policies and state laws concerning patient rights

The National Association of Hospitals Policy presented to Congress in 1969

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Physician and Patient; or a Practical View of the Mutual Duties, Relations, and Interests of the Medical Profession and the Community. The British and foreign medico-chirurgical review. 1850 Oct; [PubMed]

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